There's Nothing Wrong With My Son, He's Autistic
Society doesn’t seem to understand autism. They don’t know what it is — or what it isn’t. That needs to change.
The worst thing about raising an autistic child was the sick feeling I’d get in the pit of my stomach every single time someone told me there was nothing wrong with him.
I didn’t say there was something wrong with him. I said he had an Asperger’s diagnosis. Then I would describe — depending on the meeting I was attending on his behalf, or the relative who decided I was my child’s only problem — his challenges.
I’d list the life skills, the motor clumsiness, the sensory differences, the processing issues, the learning difference that are part of who he is. I’d explain that the speed and volume of the school curriculum, combined with the sensory and social demands of a school environment and how the constant expectation of keeping up was just too much and contributed, in a significant way, to his panic attacks, sleep disturbances, negative self-talk and associated anxiety disorder.
Listen to me. Did I just say that? Did I just defend my brilliant child’s diagnosis by sharing a daunting list of the things that are very hard for him?
Ugh. I did.
Fact is, my son is smart. Smarter than me. His psycho-educational assessment, conducted by the school board, determined he was in the 99.9t percentile. Brilliant. He is also patient — more patient than me. He never raises his voice. He really listens when people talk; he is so good at making people feel heard that more than one professional has suggested he become a therapist. Did I mention he is hilarious? His dry humor is a tonic and I have, more than once on a blue day, called him to ask him to make me laugh.
He’s resilient. Fall down 10 times, get up 11 — that’s Daniel. Apply for job after job after job after job and get no call backs — step back, regroup and then say, “Mom, there has to be something I can do. What can I do?” And he then picks something and does it.
How about personal counseling to improve his outlook and mood? Check.
Job Skills development for the umpteenth time (“Maybe I’ll learn something new in this one, Mom”). Check.
Improve communication ability and expand social opportunities (acting lessons at Second City to improve Theory of Mind and his nonverbal communication skills). Check.
Return to Post-secondary to increase his value to an employer. Check.
The fact is, Daniel is an exceptional human being. He is a smart, creative, open-minded, focused, determined, supportive, kind, passionate humanitarian who is generous to a fault, sees the good in people, and all he wants — really, all he wants — is to find love and something meaningful to do with his days.
Does he have some challenges as a result of his ASD? Only if the gold standard is to think and feel and move and be just like a typical person.
His challenges, as autism specialist Dr. Tony Attwood has suggested, mostly stem from the ignorance of society about autism… and an unwillingness to accept and value diversity in motor skills, thinking and focus, sensory experience and learning.
Daniel has had challenges due to typical curriculums and typical employers who demand he learn from and experience the world, in the same way the typical masses do.
Challenges because those doing interviews interpret his slightly slower response time as a cognitive lag instead of what it is: autism, and a need to process what he just heard and then think about the response for just a beat.
These days, that sick feeling in the pit of my stomach comes from helping other families and realizing that in 20 years, very little has changed in the way society tolerates and supports our precious autistic children. The focus is still on excising autistic traits rather than helping the children to believe in themselves and to develop their areas of strength.
The results of this concrete thinking are self-explanatory: we are maintaining the incredibly high rates of anxiety, depression and unemployment.
Simply stated, focusing on what our kids can’t do instead of what they can do is not working.
As one of my favorite autistics of all time, Einstein, once said, it is illogical to keep “…doing the same thing over and over again and expecting different results.”
Time to rebrand autism to reflect the reality: we’re here and we rock!